Tuesday, August 30, 2011

A Bit, a Piece, and Some Photos…

Sorry about the nearly two-week gap since my last post, but in addition to earthquakes, hurricanes, and my birthday, I've also been dealing with a persistent low-grade fever that seems to be related to the monthly IVIG infusions I've been receiving. My doctors claim that IVIG doesn't cause such long-term fevers, but the fevers do seem to have started when I started IVIG, and have increased in frequency in the five months that I've been on the stuff. As I'm sure most of you know, those of us with damage to our central nervous systems are especially sensitive to increased body temperatures, so these fevers have been draining both mentally and physically.

The real kick in the ass is that IVIG is the first treatment I've been on that has actually shown any benefit, having restored some strength to my extremely weak right side. Frustratingly, it doesn't seem to have stopped the progressing weakness on my left side, which is quite distressing since I use my relatively strong left side to make up for my extremely gimpy right side. Once the left side goes, I'm all out of sides, and thus shit out of luck, since I'm a mere Earthling and don't have the benefit of the additional extremities sported by some of our extraterrestrial friends. Damn, if only I was one of those six armed, six legged bastards from the planet Mu, but then again if I were I'd be forced to exist on a diet made up exclusively of tremendous brussels sprouts, and I absolutely detest brussels sprouts. Karen adores them, though, and it's only due to the magical power of love that our relationship has survived this calamitous obstacle.

Anyway, enough about me. I thought I'd share a couple of interesting MS related news items, and a new batch of photos that I've added to the Wheelchair Kamikaze photo gallery, which can be found on the left side of this blog. It's been a while since I've added any photos, so it's about time. I'll have a bunch more to post sometime soon, so stop needling me, see, stop riding me, or I'll have to reach through the Internet and sock you right on the kisser. Yikes, suddenly I'm writing like a 1930s movie gangster, so before any more such silliness ensues, let's get on with it…

· The first FDA approved stem cell trial involving multiple sclerosis patients is now underway at the Cleveland Clinic in Cleveland, Ohio (click here). The trial is using mesenchymal stem cells, harvested from a patient's own bone marrow, and then infused intravenously back into the patient after the cells have been cultivated and multiplied in a carefully controlled lab environment. Although this is a very small phase 1 trial, at least one of the initial patients is already reporting some improvements. The mesenchymal stem cells (MSC's) are thought to work by both regulating the body's immune response and initiating the repair of damaged nerve tissues, and offer the extremely exciting prospect of not only stopping the disease but also reversing some of the damage it does to the nervous system. Another small trial, conducted by Dr. Neil Scolding in England, reported encouraging results, finding that patients treated with intravenously infused MSC's showed stability and even some improvement in symptoms after one year (click here). Much larger stem cell trials are currently being readied throughout Europe, and are slated to get going later in 2011 (click here). Similar stem cell treatments are being offered in various overseas clinics at extremely high prices, but the outcome reports from patients who have traveled for these treatments have been mixed

· Yet more idiocy involving the use of medical marijuana to treat MS in the United States has once again made the news, this time in New Jersey, where an MS patient has been tried, convicted, and sentenced to five years in prison for growing 17 marijuana plants for his own use (click here). During his trial, the judge determined that the fact that the defendant has MS and was harvesting the plants as a form of medicine not be allowed to be told to the jury. The convicted man is now appealing the case to the State Supreme Court, and had been out on bail, but as of a few days ago is in prison beginning to serve his sentence. The kicker is that New Jersey now has a law allowing medical marijuana to be used for certain conditions, including MS, but it was passed after this man was first arrested. As I've written about previously (click here), the draconian anti-marijuana laws here in the US - enacted in the mid-20th century largely to protect the cotton industry from the growers of hemp - don't even allow for the testing of pharmaceutical products derived from marijuana, such as Sativex, an anti-spasticity spray available throughout Canada and much of Europe. Sheesh…

Okay, now for the photos I know you've all been waiting for with bated breath. These were all taken between within the last 12 months, with a camera mounted on the arm of my wheelchair. Most were shot in either Central Park or Hudson River Park. I hope you like them. Please click on the thumbnails below to view a larger image. I'd love to know if you have any favorites, or even if you happen to despise any of them, so please feel free to leave some comments…

20 comments:

I'm sure I can do research an find out myself, but was hoping for a little commentary from you. So how does stem cell relate to CCSVI? It seems like they are apples and oranges. Do you agree?Glad to have you back and a constant low grade fever sounds like the pits. :(

Fully half of the 16 new photos you have on the page are really cool. I LOVE the Giant Bubble; the red reflection with bridge; the golden tree next to that magnificent stone wall... your eye improves as time passes. Thanks for sharing.

kEEP US POSTED ON your IVIG progress(I know you will). It is always so refreshing to hear of other possible treatment options coming down the pipeline. Your pictures are amazing! I've never been to Central Park or the Hudson River Park, but your photo's allow me to "visit" these places! Keep blogging...I look always look forward to what you have to say. KIM

Hi Marc, I love the pictures of the Bow Bridge. I have pictures on my wall of the bridge from each season that I bought when I was in New York from a street vendor. Your pictures are much more beautiful.Take Care,Joanne

Hi Marc,This is the New York they fail to show on Law and Order but you know it's there. Autumn is my favorite time of year so bird statue, arch man and strolling man are my favorites. I like 'em all though.I appreciate your posts. Always nice{?} to know there is someone who "gets" what I am going through. I wish it wasn't you [or me] for that matter.Best Wishes for Good Days,Virginia

My favorite (and they are all really, really good) has to be 67th-Street2-1.jpg. One light, in darkness, speaks to me. Anyone can take a photo; the professional can take a great photo. But it takes someone who has experienced life fully to take a photo that talks, that shows feeling.

In regard to your photos--I am almost always somewhat emotional when I first see a new one--you capture so much more than a beautiful or striking image--you somehow grab up the feelings that accompany the photographed. I don't know how a stone arch can have feelings but in your work, it does!

My favorite is the man walking, though there's something about the angle of the woman dancer that compelled me to look long at that one too, Heck, they're all just terrific.

Thanks for all of the high praise, folks. I had to put down my camera for about three years, when I was no longer able to hold a camera to my eye. When my disease progressed to the point that I needed a wheelchair, Karen persuaded me to try rigging up a camera to the arm of the chair, and voilà, I was back in business.

In answer to those who asked whether I've ever sold any of my photos, the answer is no. It would be nice to find a publisher to put together a book of my essays and photos. I need to start making some inquiries…

Nicole-stem cells relate to CCSVI in that if it does turn out that CCSVI stops the progression of MS, stem cells could then be used to fix the damage that had been done by the disease. Once nerve cells have suffered a certain degree of damage, they don't have the ability to repair or regenerate. So even if CCSVI stopped the disease process, any permanent nerve damage would remain. That's when stem cell therapy could step in, and repair those damaged cells. I'm speaking only in theory, of course. Neither CCSVI nor stem cell therapy has yet to be proven effective. I personally think there is much value in both, so the future is certainly brighter than it was just a few years ago.

Anonymous-just to be clear, IVIG is not a new treatment. It's been used for years to treat a variety of diseases, many of them autoimmune. It has been used on MS patients, although not all that commonly. I'm now trying it because of the questionable nature of my diagnosis.

Ugh, running out of sides sucks. I'm running out of legs, so I can sympathize somewhat. But that is cold comfort. I am sorry.

As to your pictures...you sure aren't running out of talent or vision. Every one is a gem in some way, especially if you love New York. There are so many ways you could market these - greeting cards, prints, a little book, "Central Park Moments", or maybe something less corny. A little book is easy peasy through Blurb, you have complete control and self publish, costs about $12 per hardcover 7 inch book. You could sell your stuff on Etsy. Or create your own site. The possibilities are endless with talent like yours.

P.S. Pay no attention to comments I leave on years-old posts thinking you wrote them yesterday. I have holes in my brain.

Would love to know the history of the first picture in this set - the abandoned derrick or other river-side structure with the rising/setting sun through the clouds. It tells a story, but it's a mystery to me.

Just happened across your videos on YouTube, and bookmarked your blog. Absolutely LOVE the pictures!! What kind of camera do you use?? I love taking pictures, and also happen to be handicapped. Been in a chair since birth.

Thanks again for all of the words of encouragement regarding my photos, I suppose I really should try to do something with them, other than post them to this blog.

Larry-the structure in the photo is called the "69th St. Transfer Bridge", and was built in 1911 when the New York Riverfront was bustling with industrial activity. The structure served to transfer railroad cars onto barges for trips across the Hudson or to waiting freighters. I believe the structure was abandoned in the early 1970s, and it's now on the National Registry of Historic Places.

Neil-I use a Panasonic Lumix G2, attached to the arm of my wheelchair with a Gorillapod. I can lift the camera to my eye because of the weakness in my right arm.

Dear Marc,My story is similar to yours and sentiments identical. I had read your name on another MS blog, but it is first visit after my father inquired if I knew you. Amazing, comrehensive blog and unbelievable photos (particular affiliation for those of abandoned structures). Keep on truckin',jill w.

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Regretfully, due to the high volume of e-mail received and the realities of living with progressive MS, I'll no longer be able to respond to all e-mails sent. I do read each note, and will do my best to answer as many messages as I can.

About Me

I'm Marc, a 53-year-old male, living in New York City with my lovely and wonderful wife Karen. Diagnosed with Primary Progressive Multiple Sclerosis in March of 2003, I now require a wheelchair to get around the city. I like to drive the wheelchair at full speed, thus the moniker "Wheelchair Kamikaze". I've managed to rig a camera to my chair, so I'm able to take videos and still photos from the unique vantage point of a wheelchair, which I intend to post here.
Before getting sick, I was the Director of DVD Production for one of the major international music companies. Yes, I was once a member of the Evil Empire...
Prior to my enlistment in the Evil Empire, I worked as a video producer and editor.
I grew up in New York City, and spent the 1980s in Boston (college and postcollege rock 'n roll craziness). During the 1990s, I lived in South Florida, until I woke up one morning and realized I was living in South Florida, came to my senses, and moved back to New York.
I hope you like my blog...